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"Writing this doesn't seem real..." - Sophia Blair

On January 1st, 2023, my little brother Bryan woke up in the middle of the night with a migraine. Since then, his vision has deteriorated at an alarmingly rapid rate.

Bryan Blair is 16 years old, and is undoubtedly the most studly kid I know. He loves music, lifting at the gym, playing sports, biking, cooking, and hanging out with his dawgs (both human and pet, lol). He was on Varsity wrestling since 7th grade, and was the captain of his wrestling teams in both middle school and high school. In the summers, he’s a camp counselor. He is extremely smart, and is in a variety of Advanced Placement courses as a junior in high school, including AP Calculus.

Not only is Bryan smart, athletic, and socially intelligent, but he has a kind, genuine soul. Adults in his life have always commented on how mature he is, and how he has such a good heart and a good head on his shoulders. His life was on a beautifully bright path… he was dominating Varsity wrestling matches, had just gotten his driver's license, and was conquering his junior year (the infamously most difficult year of high school)... until it all got derailed literally overnight.

After weeks of his vision getting blurrier and blurrier in one eye, the other eye started to go, too. Doctors at Stanford Hospital’s Byers Eye Institute conducted a myriad of tests for weeks, and it took them a few months to come to a diagnosis. Ultimately, we found out that Bryan has an extremely rare genetic mutation called Leber’s Disease, or Leber Hereditary Optic Neuropathy.

Before January 1, 2023, Bryan had 20/20 vision. Recently, his doctor told him that he will be legally blind in both eyes by the end of April. It only took 4 months for total deterioration- the fastest case that his doctor had ever seen or heard of.

The disease is so rare that it’s estimated only ~35,000 people worldwide have LHON vision— that is as many students as my university has. There are three mutations you can have within LHON, and Bryan has the rarest one with the worst prognosis (3460).

This is the craziest thing my family has ever gone through and feels so random and unfair. One of Bryan’s favorite things to do was going on drives. He had just gotten his license, and whenever he needed to clear his head, he would hop in the green Subaru we shared and venture into the Santa Cruz mountains. He can no longer drive and probably won’t for the rest of his life, he had to quit wrestling, and he is unsure if he’ll experience his senior year of high school as a student or if he’ll be a patient in a medical trial. His life has been flipped completely upside down and the path ahead is blurry (both literally and figuratively). He went from being a normal high school student who’s biggest problem was passing a Calc test, to a patient who’s biggest problem is now whether or not he can pass an eye test.

He meets the relentless anxiety and uncertainty he faces with humor and lightheartedness, and despite the circumstances, he proves to still be that mature soul he always has been. His outlook on the situation is positive in that he knows to his core that nothing can stop him from achieving his goals of getting into a good college, getting a good education, and becoming a successful individual. Just because his path may be different now, he is still the most motivated, determined, hardworking, strongest person I know.

All money from the GoFundMe will fund medical bills, which add up so quickly. There are several trials we are trying to get him into that the money would also fund, and a possible procedure just got developed in France and is still in testing. If there is any leftover money that doesn’t go towards Bryan, he wants to donate it to further LHON research and find a cure.

We thank you from the bottom of our hearts....

The Blair Family